having a bad go

[mokibear]

I'm sitting here wondering if I should send this or not. But something in me keeps saying do it so here goes.
There is a post on here that hit home with so hard last night that it took everything I had not to start crying. This person has it so much worse than me yet shows nothing but determination and humor throughout. Somewhere through along the line I have seemed to have lost that will to fight.
I have always been a fighter. I lost the use of my arm at the age of 3 do to an accident and the doctors wanted to amputate as they said I would never use it again. My dad said no(thank goodness) and in 2 years I had full use back. I fought over 8 years to have a manic depressive who talked to God and was stalking me put in a mental institution where he could get help. Fighting is not new to me. But I always knew what I was fighting.
How do you fight a battle that you do not understand? There don't seem to be any rules. I never had a problem telling a doctor off and now I sit like a bump on the log. The neuro I had seen was an idiot and I know that but even though I questioned some of the things he said I did not fight. I need to find a new neuro but am putting it off using what ever excuse I can. I know I am getting depressed and I try not to show it using the tool I've always used which is humor. But I feel like a fake. My family is greatly supportive but they have their own issues now to deal with. My hubby whom I love dearly is a good ole country boy who has trouble talking about emotional issues. They all worry about me so much that I just can't concern them with more.
The stupid thing is I'm taking a home correspondence course in counselling. I'm getting in the 90's and yet I can't even help myself right now. I know the right things to do and say to myself but I just seem to wallow in self pity right now. It makes me feel guilty to know there are others here so much worse off than me and yet I can't seem to get out of it. I feel like I've lost a part of my identity. I want it back but I don't know how. I want the fight back!! I'm just so tired of hearing the last two years that it may or not be MS and then probably not MS but no real tests other than the MRI's to rule out anything else. This was at a MS clinic. I'm frustrated and not too sure why the fight left me. I want my true sarcastic humor back to. Even if I don't get well I want these 2 things back. I know you have all gone on some rough roads yourselves. How did you get out of this dark place?
Moki

[mikemolly]

I hope your feeling better Moki.
I'm so sorry for what you have been through. It's not right that we have to fight so hard to be heard and helped. Endless cycles of new doctors, testing and let downs are very hard to deal with.

About hitting that enter button...sounds like me! It can take me hours to write one post...lots of writing, deleting, writing....

I was just saying in another post - Talking to my husband is like communicating with a rock or stick! I think *maybe* he hears me, but it's hard to tell. I get zero feedback from him emotion wise.

I'm just getting over a 24 hour emotional "blip on the radar". I expressed my feelings here and recieved so much support! The responses to my first post here had me crying like a baby...they understood what I was going through! Just knowing there is someone pulling for you is a great feeling.

Take care,
Bethany

[NrssAngel]

I am so sorry to hear you have not been doing well.  I am the new-be here and have not been diagnosed yet but I can certainly relate to your feelings.  I just want to tell you not to be too hard on yourself because if you are depressed, that in itself is very difficult to deal with.  Other's inability to be compassionate or at least convey that to their patients' has nothing to do with you.  It is not your flaw but their's.  And as far as medicine is concerned, it is suppose to be a collaborative effort between the MD and the patient.  In other words we do have a say in our treatment.  And when it comes to insurance companies covering different tests, I think they all deny the first time.  It drives me crazy.  I have had sleep problems ever since I can remember and now I wake up and feel like all the oxygen has been sucked out of me not to mention the energy and desire to just get out of bed.  I too felt guilty for complaining so when others are worse off than I.  But I do believe that depression can be extremely debilitating.  Not that that is what is going on with you...but the first time I had it I was about 14 and I stayed in bed all day and just sobbed.  Couldn't tell you why but I couldn't stop.  Then again when I was about 22 I remember my aunt and mom took me shopping to try to cheer me up and it was like I wasn't even there.  I was mentally numb.  It's crazy how when I start thinking about the past, I remember things.  I wonder if I do have MS if it is not a case of child onset.  I used to loose my vision for a few minutes at a time and this happened often.  I also passed out cutting grass one day.  Then when I was about 13 I woke up one morning and couldn't get out of bed.  My muscles would not move.  I spent the night in the hospital and my ability to move returned.  No diagnosis though.  I think just muscle spasms.  Anyway enough about me.  I just wanted you to know as I'm sure you do that you are not alone and to be gentle to yourself.  Some times I just get sick and tired of being sick and tired.  I've really been frightened lately because my symptoms do tend to be more cognitive with embarrassing forgetfulness to the point that I just asked the same question a few mins earlier and the mood swings are like the speed of light.  I've been going to a PT for my muscle pain in my shoulders, neck and head and they are frustrating me because they feel that I should be improving with their treatments.  It is very frustrating.  And if I could just get this piece of lint out of my left eye maybe I wouldn't be so irritated (not literally a piece of lint) JK...I assume it could be neuritis.  Anyway, I hope you are doing better.  Thank you for the welcome BTW.

Angel      
  

[mokibear]

Sorry I haven't been on for a couple of days but it's our Thanksgiving weekend here in Canada. So happy gobble gobble. I thank all of you for responding. I had felt so alone and realize now that i'm not. It is a sad world though that any us has to go through this but at least we have this forum that is filled with so many wonderful caring people. I can't imagine what I would do without you fabulous people. I'm working on getting my fight back and hubby and I had a really good heart to heart again over the weekend. I'm still a little down but I feel as if I'm not in that real dark place anymore. Thank you all for being there. Sharing feelings is not one of my strong suits, but I'm glad I did and thanks to you all for sharing yours.
Praying for us all
Moki

[Eliza3]

Boy! I thought I was reading my life. It is hard to fight when you get dr's that seem to pass you off. My sister went through all kinds of dr's.  I have seen 3 neurologist in 20 yrs. This last one say's maybe to MS since the MRI show's MS but not sure. Go home and live your life don't worry is what I got from him. So here I go again. I am going to wait until after January to find another Neuro. My good friend who has MS has a good dr so I'll try him out. It's ok to get on antidepressants, I have decided to go back on mine. I'll keep you in my prays.

[JI Jo]

Thanks guys, now here I am crying at work.

Just brilliant.

Jolene

[uk2]

I was having a tear free day till i read your post! id just posted how i had a tear free day too lol, till i read your post, God lead you to this site you opened up and sometimes thats all we need to do. Im a strong willed active person (was) and to ask for help is hard i dont talk to my husband that much either and i should but i just cant make him understand how i feel but he does support me the best he can!!

WOW how great was it that your Dad just knew you were having a tough time my parents when alive were so there for me every corner of the way and i was for them in there illneses but i never really understood what mum and dad were going through till now!! and i do wish i had supported them more.

Its great you have told your husband how you feel you are a team and im sure your pull through this together.

I know whats its like to fight an illness you dont know what it is you have ideas but till you have that dx your left in no mans land and thats frustrating, i just pray both of us and others on here will get answers soon.

samantha x

[T-lynn]

You sound so much better.Yes,parents are amazing and so is your hubby.

When your ready you'll find the right neuro hang in there and have that ice cream

[mokibear]

I'm sorry you are not doing well.You would be better to do your own post rather than on this one. It would be seen better. Just go to the forum page and at the top it says post question. These are wonderful people who have great advice. I know that they will help guide you in the right direction. I just don't want your question to get lost in here ok.
Moki

[mokibear]

Oops finger slipped. Must be wet from the tears streaming down my face. I just can't find the words to thank all of you for your responses. I am so overwhelmed right now. I am just so thankful that i finally hit the post button. It took me 15 min. to actually send it. I kept reading it over and wondering should I or shouldn't I. But this little voice inside said send it already.
I have had a bit of a rough week and I think that is what brought all of this out in the open for me. And I guess to see the courage that was displayed in this forum reminded me of who I once was. It kicked me in the tush and said hey you were like that once, what happened. So the I feel sorry for myself kicked in and the rest you know. I know I will get through this. There is no way that I couldn't with all the support from you wonderful incredible people.
It has been a strange day for me. After I posted my father came over to visit me. We talked about his heart condition and the options that he has. He then looked right at me and said now lets talk about you and how to get you fighting again. I couldn't believe it. Here I thought I was fooling them and NO I wasn't. Parents are so amazing.  So we talked about how I'm feeling right now. The frustrations, the anger, the not-knowing. My concern about how this is affecting everyone around me. We talked for a couple of hours. He is amazed at this site. (I told him about you all) He said when we find a new neuro to ask you all on how to deal with him. What questions I need to ask, what tests should still be done etc. He said with this forum I can go prepared and he is soooooo right. He said if he can't go with me then I have everyone in this forum who will probably be right with me.
I am going to find a new neuro. I will probably wait a little bit till I feel the fight in me more. I can feel it itching so that is a start. I want to have the fight back before I go though so I can kick his a** if he is a jerk. lol
My hubby and I also talked tonight. He knew something was going on with me but didn't want to push it till I was ready. (Boy lost my ability to fool people too lol) He had a hard time talking about it but he did listen to me and did say how hard it is for him when there is nothing he can do. He feels helpless in all this. He will support me the best that he can and told me we will get through this thing.
I'm very independent and have a hard time asking for helpbut I'm going to start working on that. I will" put up my dukes" and work on getting it together again. I am just so thankful for all the support I have now. I don't think I could do it on my own.
Thank you just doesn't seem to suffice. I hug each and everyone of you. And now I think I'll go for that bowl of ice cream Quix suggested.
Moki

[frann]

Hi Moki,
I just wanted you to know you are not alone in this fight. You have a great bunch of friends that feel your pain and want to help lift you up.

It is not that we are stronger ( not by any means)... it is that today you need us and we are here for you... tomorrow or the next day one of us may need a boost from you... so as the song goes... that's what friends are for...

And All,
I truly believe this with all my heart that God has placed all of us here...feel the love, prayers and concern.

God bless,
Frann

[T-lynn]

Ya made me cry,no kleenex'x,but the shirt sleeve surfised,

What you are feeling is very normal and many of us here has been through it.It took me 4 neuro's it was the 4th that had the brains God give  a donkey to reveiw all my reports and Mris and say well you have MS.Well no ****,I knew that I was told in 1998 when i had transverse myelitis,my younger denial years.

wallowing in self pity is okay,I do it everytime I have a relapse,I've had 3 since March.So I have gotten to wallow 3 times this year and and the year ain't over yet.

Not having a DX,the unknown is scary especially when you get the jerk off neuro's looking at you like ya need a white coat and why are you wasting there times.Your just in a defunked moment and it will pass.

Humor and sarcasom is great when dealing with any disorder,but sometimes we loose it for a while.But its still there deep down,it will be back and you'll get reaquainted.

I was told today that my MS was SPMS,yea thats what he thinks.Deep down I know,but I ain't letting my body know.I cried half way home and thought thats stupid.

Ask your GP for something mild to help you through this,theres no shame in that.I take valuim twice a day,it takes the edge off and it still leaves me with my spunky onry self.

I have days that I have sat and cried for no reasons,I know it sounds rediculous but I think its more greiving for my old self,but as I have found through time, I still am my old self just with limitations.

Moki ,you still have the fight,you'll find the right neuro.Its time to put the boxing gloves back on.

T

[GmanUNC]

     I am 20 years old and have been having persistant problems for nearly half a year. It started with a stomach issue in college after I had been in a very heavy weightlifting competition. I was so structured and healthy before and rarely had medical problems. Since that time, I have had issues with my stomach and bowels, then I was unable to wear contacts after going to the eye doctor 5 times but glasses are the only thing that works for me. It has been EXTREME these past few days. At first I had contant dull or stining pressure on the top of the let side of my head, then neck pain and dizziness, confusion, eye pain, now my jaw has been absolutely killing me and I havent been able to eat much in days. I dont feel that hungry, have felt faint or surreal, have tingling sensations in my arms at night and sometimes headpain so severe I cannot sleep. My ears have felt full and my face hurts in general however, no reports of ear infection or sinus issues. Its becomming disabling and my family is starting to collapse. We have always been happy however this summer has easily proved to be the most stressful and traumtic we have ever been through hands down. More recent symptoms have been frequent urination (sometimes buring), vomitting, loss of interest and I cannot even go to school at the moment. I recently saw a dentist after being told OVER and OVER again that this is all stress and anxiety, however the neck pain, eye pain, jaw pain, ears, sinus, and facial pain is thought to be TMJ or Eagles Syndrome.Could there be anything else? I did a cat scan a while ago and was neg. for a brain tumor, however there is a spot on my head that is very tender when touched more so than others. Please helpme as I used to a very happy person, very out going and fun, now I cant sleep at night and my parents and brother think I am crazy. The only people that have been truly supportive have been my closest friends. Should I ask the docs that did the cat scan to actually SEE the results. I have been to him before and consider him to be a poor doctor. Any help would be MOST appreciated!

                      Garrett

[doni54]

Your post made me cry, for you and for all of us here who feel this way.  Not long ago, I wrote something similar to your words. Carol, zilla, samantha, frann, Quix and Kristin all took great care of me.  I actually didn't realize how deep my depression was, but these guys heard it in my words and straigthen me out quick.  

You sound just like I did, just no fight left.  There are so many of us in this little family that are having to fight multiple fights, not just our health crisis, but all the other things too.  You sound like a very strong person that is just having a small crisis right now.  Well, girlfriend, put up your dukes!!!!!  It's time to fight again!!

We are all here for you and know you will pull yourself thru this bad time.  Just know that we are all here for you and there are many of us who feel the same as you.

Love and ((((((((((((((((hugs)))))))))))))

doni

[Quixotic1]

Hi, Kiddo, You did the right thing by hitting "Enter."  Those dark times do wash over us and overpower all of our efforts to move through them.  Most of us have been there at some time and you just take each moment with whatever it presents and then the next.  A lot of us would not even be able to say exactly how we came out of it, but we do.  In your studies you know that the bad times cycle and resolve.  Studying to be a counselor or a doctor or social worker or nurse gives you some insight, but doesn't help that much with the dark, lost times.  What it does do, though, is often cause us to whip ourselves over our failure to overcome.  Stop it!  That someone else is "worse off" is actually immaterial and serves to make you feel less worthwhile.  Your blackness is as dark as theirs.  You can't grow by denying that your pain, fear, and fatigue are valid.

You are overcoming, by sitting at the screen and pressing Enter.  You are overcoming by being angry and bitter and scared and acknowledging it.  It is true that "other people may have it worse", but that isn't helpful when you are feeling such loss and pain.  You feel what you feel - and that is legitimate.  I wrote a self-pitying email to someone at the beginning of the summer.  They had shared a "Pep Talk" motivational article about not succumbing to the drain of a chronic illness.  The article, in all truth, pissed me off.  It was so "perky".  Fight it. Don't give in. "Just Do It."  I wanted to gag.  My response to that was, "Fight with what???"  So much of the last 6 years after losing everyting I had ever tried to make of my life, I have felt wrung dry of all fight and all desire to do anything, but watch the days pass.  I consoled myself making quilts and knitting.  Playing with textures and color raises my spirits.  The work certainly didn't amount to much.  I wasn't improving the world,  I was adding nothing positive, I felt like I was waiting for life to just be done.

The worst was when I was without a diagnosis for my failing body - in the same place you are.  My doc had basically accused me of making up symptoms in order to get medical tests done.  Part of me wondered if I was just truly insane.  But, time passed, I learned more, I found another doctor.  Then Everything was better with a name to my illness.  But, even that faded, but the boost it had given me got me online reading about MS, then I spent some time on the Neuro Forum and saw how many people were suffering.  The they started this forum, and I came into it with the purpose of giving people info and direction.  The only reason I was able to pursue my own diagnosis, was that I had enough knowledge to navigate the system.  I intended that this forum be a haven of support and knowledge and community.  I couldn't stand the forums of "Drop in.  Ask a question.  Get a Couple Answers and leave."  Little by little this forum led me back to the Light.

You do sound like the depresssion has grabbed ahold hard.  There is no shame in seeking some help for this.  I would never have made it through the last 6 years without an antiperspirant  (....antidepressant...where is my mind?...The people around me made it through with my antiperspirant...Sheeeesh!)  

Your family may need to see the real self.  You rob yourself of energy in the attempt to deceive your loved ones about how you really feel.  You rob them of the gift of helping you and you further isolate youself.  Talking here is precious, but it is a stopgap measure in your actual life.

We are all with you anytime you want to post, someone will be here to answer.  There will be a resolution to all this.

An old CATHY cartoon:  New Year's Resolution:  

Short term goal - "Make it throught the day."

Long Term goal - " String together a bunch of short term goals."

There is nothing like a little inappropriate humor.  It's okay, I have a brain disease, it makes me inappropriate.  I send you a huge, long (((HUG))) during which you are to sob and feel bleak.  Then it's time for some ice cream.   Quix

[kitten o]

I FEEL THE SAME WAY. TODAY MY SHOT WAS BAD, I CRYED. MY HONEY (JOHN)
GIVES THEM TO ME. HE CRYS TO. I SOMETIMES WONDER HOW HE IS DOING?
HE TOLD ME HE WANTS TO GO TO A SURPORT GROUP.
I AM SCARED, I DO NOT NO WHAT TO SAY TO EVERYONE.
I HAVE TO BE STRONG, NO MATTER HOW MUCH PAIN I AM IN.
IT IS NOT EASY. I WAS VERY OUT GOING AND NOW SOMETIMES,
I CAN NOT GET OUT OF BED. I DO NOT NO HOW TO DEAL WITH IT.
THANKS TO GOD FOR THIS FORUM AND EVERYONE HERE.
WE R NOT ALONE.       KITTEN

[Roxie0818]

I had to go get kleenex's... and Im with Carol.. not sure if Im crying for you or me.. but I can totally relate and I have been feelling that way these last few days .. and I just told my fiance  few hours ago.. that I cant seem to get out of this funk!...  Im a fighter just like the rest,... I ve dealt with my mom dying, my son having brain damage at birth, divorcing my  husband, going thru prostate cancer and bladder cancer with my dad.. and then moving 2200 miles away to be with my fiance.....WE KNOW WHAT FIGHT MEANS... but yet, its gone.....As carol also said, wish i had something magical to say or do for you.. for everyone.. but we have each other and no YOU ARE NEVER ALONE... I do have three kids  ages 10, 8 & 5  that keeps me going.. and I know I have to be strong to help them.. esp my son... anyway, Just know that YOU are a fighter and never give up.......Wish I could hug ya......my thoughts are with you.. and I bet there are alot more people here that feel the same way.. its just hard to push that darn send button!!  lol    
take care
Roxanne

[sllowe]

Thank you for sharing your thoughts with us, it must of been hard to hit that send button.  It shows your strength.  Even though you acknowledge that you know what to do, physically doing it is a whole 'nother ball game.  I can relate to the not talking about feelings part w/the hubby, most just don't understand.  

You might not be able to come out of that dark place all at one time Mokibear, just take your time, ease back in, one hour, and day at a time......and know we are here with you.

Be well,

SL

[grannyhotwheels]

Your situation sounds so familiar to me that I have tears in my eyes.  I'm not sure if there for me or you.  Everything you described sounds just like me but it also sounds like Samantha.  I'm sure there are others here that feel the same way and just can't talk about it yet.  

There are no real words that anyone can say to magically take the pain and frustration away.  It's like I told Sam, by taking anti-depressants and of course my walk with God are the only things that get me through each day.  That's another thing, don't look ahead of what might happen or how bad things could get.  Take one day at a time.  Sometimes you have to take one hour at a time.  You will get through this but you can't do it on your own.  Get help with medicine and counseling if you think that would help and keep talking to us and your other friends and family.  Let your husband know how you are feeling.  Let him read what you just wrote.  You know he loves you but don't cut him out.  One of my biggest problems is I have cut my husband out of my life for so many years that It feels lost.

You are a strong person and only you can get that back but taking it one day at a time and wake up saying I can do it will go a long way in helping you.  Please keep talking to me or us and that right there is medication of a sort.

I'll be praying,
Carol